My story of being a hypochondriac, an MS patient, and a guinea pig.
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Saturday, August 20, 2011

Another Normal Boring Day - 4th Anniversary on Gilenya!

Today marked the 1460th pill I have taken since August 20, 2007. It's been 4 years since I started this study and I'm happy to report I spent a normal, boring, uneventful day much like anyone else I know. Totally UNlike the days I spent leading up to this trial.

If you had told me 4 years ago that things COULD get better and that I wasn't necessarily on a slippery slope leading to total disability from MS, I would have maybe laughed at you. Then again maybe not as my sense of humor was severely lacking from constantly being beaten down by my MS symptoms. I didn't laugh at much of anything back then.

Today, 4 years later, here is how I spent my day...

I got up at 9:15 after laying in bed watching TV for a while, deciding if I was ready to fight my right hip which has decided to remind me that I'm 50. They say you're only as old as you feel and most of me feels 18 but that stupid hip wants me to be eating prunes, sitting in a rocker knitting a shawl because it's a bit chilly in here. So the hip won out for a short while, but then I was up and making coffee.

Note how taking my pill is nestled nonchalantly between two other mundane normal activities. That does not go unnoticed by me. It's been four years, but every day when I pop that pill out of its blister pack I am amazed that I am fortunate enough to be JUST taking a pill.

Used to be my morning went: get up, eat breakfast, get dressed, FRET OVER MY SHOT, fiddle fart around, PUT THE SHOT OFF, run errands, do other stuff and finally some time before bed, DO THE SHOT. It was the least favorite part of my day and was always dramatic and stressed me out.

But I digress. I took my son to the shoe store to get his back to school tennis shoes and since they were having a BOGO sale (well actually BOGOHO but that doesn't sound like something you should say in mixed company. The second pair was 1/2 off, suffice it to say) I found myself trying on high heels. My son was totally distressed about it. He said "that's not YOU, Mom! You look too weird! Take them off!!" And I said "Why do they not look like me? I think they're cute!"

His response? "You are flip flops and sneakers, Mom, not high heels." All I can say is he has only ever known the MS me and not the younger healthier me who loved to wear heels. I did end up putting the heels back on the shelf and got a Hello Kitty purse for my granddaughter instead. The purse will get more use than the heels would have, but the point is that it was a day where I actually dared to think it might be possible.

There have been so many things that MS has stolen from me over the years that even something so simple as putting 2 shoes on my feet in a store and standing there, not falling down, seemed like such a major accomplishment. Sure, maybe I'd look silly in them and I would never buy them, but the feeling I got of knowing I COULD if I wanted to...well that was priceless.

I also went to the parts store and carted the old battery from the lawn mower inside and exchanged it for a new one which I carried out and plopped in the trunk. Another boring, normal thing most anyone might do. Unless they walked with two canes like I used to. Those days may be fading farther and farther into the past but the memory of those times, and the realization of what a gift I have been given is always right near the surface of my mind.

People who have never know illness, or disability can maybe never fully appreciate the simple things. But once you have been there, if you are ever blessed with a new taste of normalcy, you will relish the little moments.

I felt the hug of my son today as he came in to see if I was okay after I had napped for a couple hours. There was no numbness as he wrapped his arms around me.

There was no excitement in my life today. It was boring and normal and just another day. Thank God I am so blessed. Normal is the most wondrous feeling of all.

12 comments:

This blog entry made me a wee bit misty-eyed. I, a total stranger to you, am so happy that you have told MS who is boss as well as you can. Indeed, here's to countless more ordinary days. Bless you and your wonderful blog!

Thank you, Tambeth, for reading my blog. Sometimes, when I go for long stretches between entries, I figure "what's the point? Nobody's reading this stuff." But then someone like you comments and I realize sharing even this normal stuff is important to someone out there. We're even now, you and I. Your comment made me misty-eyed as well. :)

I have become quite addicted to reading your blogs. I congratulate you for reaching your wonderful milestone and for sharing your thoughts and experiences in such an eloquent manner. I hope I will succeed at reaching a similar milestone. I have been on gilenya now for nearly 4 weeks. I nearly quit after 2. I became severely depressed and my mood swings were all over the shop. My brain just felt foggy and I couldn't concentrate or function properly especially at work as a professional Landscape Architect. I missed one tablet, and the fog lifted, I felt normal again. But I had gone though a lot to get on gilenya, and thought I should just push through it and give it a bit longer. Basically it has been your blog that has encouraged me to keep going. I want a normal life again, and you have shown how that can be done. You are truly inspirational. I am so glad I did. The fog is slowly lifting from my brain along with many of the other side effects (headaches, tiredness, fatigue etc), and I am starting to feel normal again.Thank you so much for your profound words and inspirational story. Please don't stop.Meg.Melbourne, Australia

@ Suze: you know, I've been toying with the idea of going back to buy some chunky low heels. No stilettos - I'm not that delusional - but maybe some 3" or lower. Work my way up. lol And as far as the dancing goes, standing on them will probably be quite a dance by itself.

@ Meg: Thank you so much for taking time to share your story. I'm so glad you could push through the brain fog and that things are starting to smooth out for you.

I forget sometimes that there are people out there who look to my blog for hope about their MS. Thanks for putting a face on the audience. :) Wishing you much success with Gilenya!

I've been following your blog for about 6 months now, and I visit often. I was diagnosed with MS when I was 20 (I'm 41 now), and, because i HATE needles, i recently switched to Gilenya! Your posts helped to make me feel it was the right move, and i'm extremely grateful to you for being brave enough to enter a clinical trial. I've been taking Gilenya for 3 weeks. No side effects, but I'm in the midst of a 1-week MS exacerbation :( I'm not blaming Gilenya (I'm assuming this would have happened when i was on avonex, too), and these don't happen often, so I can't complain too much. I know Gilenya beat avonex in that study you were in, so I'm hoping those results were reliable and not a happy accident. I'm not doing SO bad right now, and i'm starting to feel better (on a short course of prednisone pills to help), so i think all will be fine. But thank you again for your helpful (and so clever and witty!) posts!

I hope you DO get all the great benefits I got too, Francie!! Best of luck to you.

Sometimes I feel like I'm in the pool and enjoying the swim while others are testing the waters and sticking a toe in. I feel like I should be shouting "come on in! The water's great!"

But it is true that MS is different for all of us, and likewise our response to medications. I have read of those who have had side effects which necessitated they stop taking G, and even one poor lady who had an allergic reaction, but I have heard far more stories that are similar to mine.

Yes, people read your blog! I have been reading it for years. My experience on Fingolimod (Gilenya) has mirrored yours in so many ways. Thank you for writing it.

To those of you who are struggling with the first few weeks, please hang in there. I have friends in our MS support group that can't take it for various medical reasons. You are lucky! Hang in there. It's absolutely worth it.

Finally, you delivered a great message in this post. Being able to do the little things in life is such a joy. Few of my family and friends remember how bad I was before the clinical trial because I am doing so well. But I remember.

I appreciate being able to help my mom with the dishes or making up a king-size bed by myself. I appreciate being able to stand on one foot and balance. I love no longer having to use my disabled placard or my cane. I love being able to wear girly shows (no stilettos but wedges and block heels like you.) I am 51 and have had MS since I was 25. I am living life again.

Thanks so much for your commitment to your followers because we do exist! Susan

Hi Susan!! Thanks for commenting! It means so much to connect with others in the same position. Lets us all know we aren't alone. :)

You mentioned standing on one foot and it reminded me... putting on pants without having to sit down first. Can't tell you how many times I ended up on the floor before Gilenya! LOL The little things most take for granted, we are in awe of being able to do.

Four years already? I've enjoyed being able to take the journey with you even if it has only been from reading along. You've come a long way and I'm so happy how things have changed for you. You are an inspiration!

Disclaimer

This blog, gilenya.blogspot.com, is not affiliated with Novartis Pharmaceutical Corp. or its branded product, GILENYA (R). The content herein is solely the opinion of the blogger.

Furthermore, I am not a medical professional and the content herein is presented as solely my opinion, and should not be considered as medical advice.

Everyone's experience is different and I am not suggesting that my experience is typical.

Keep an open dialog with your doctor and be sure to discuss any questions you have with him/her. Never act on anything you may have read on the internet -- whether on this blog or elsewhere -- without first discussing it with a qualified healthcare provider.